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Occipital Neuralgia

This past Monday morning was the Nerve Block procedure for what my Neurologist, Dr V said was Occipital Neuralgia.

I was extremely anxious beforehand and debated between taking Xanax or Ativan to relax me and make the procedure more bearable. Xanax won. About 45 minutes before we left I took it and then as I was about to walk out the door took another half because NEEDLES IN MY HEAD.

I didn’t see Dr V this visit. The Neurosurgeon, Dr C was doing the Block. He seemed nice enough and explained how it would all go. He told me that I would have the best luck if he did BOTH sides instead of just the right side. (OH MY GOD, WHAT??). I could feel my blood pressure rise and hear my heart beating in my head.

I didn’t need to lay down. I just had to sit with my back to him, facing the door and bend my head down as if looking as my lap. He began moving my hair and parting it to find the spot he needed. He had me hold my hair for him as he wiped my scalp with alcohol. He hadn’t even hurt me yet but I could feel the tears coming. Then he said the most horrible thing ever…”Wow! This is a big needle!” He wasn’t being funny or trying to bring levity to the situation. He actually meant it. There was no stopping the tears now.

1…2…3…Poke! I cannot even accurately put into words the intense stabbing, stinging pain of that needle. He pushed it in deeper and then he turned it while it was in my head. All the while injecting the numbing medicine into the nerve. I couldn’t stop myself from yelling out in pain. Then he was done. With just the right side.

Dr C gave me a few minutes to compose myself while he dabbed my head making sure there wasn’t much bleeding. Then the whole process began on the left side. I’m not sure why but the left side hurt even worse.

Thirty minutes from the time I walked into the Office from when I walked out and it was over. My entire head throbbed. My eyes were puffy from crying. I just wanted to go home.

I slept pretty much the rest of the day.

Wednesday morning the migraines started again and I’ve woken up with one every morning since. Pretty disappointing.

Quite honestly, I’m not sure what I’m going to do. I don’t want to have my meds changed. None of the options were good and they all needed approval from my Oncologist. I should be thankful this is my biggest problem right now.

Next month, I’m off to Sloan for a check-up and then I help move Adam into his dorm!

Like this:

It’s been some time since I’ve talked about the Brain MRI I had back in May and there was a reason. The biggest reason was that I didn’t want to jump to any conclusions or speculate ‘out loud’ while the two biggest events in my son’s life were happening – his graduation from High School and his 18th Birthday. Both of which have happened. (Happy Birthday Pup!).

I had a Brain MRI because I was having an increase in the number of migraines per week/month than I am used to having since being on a maintenance medication (Topamax) that is supposed to stave off the migraines. I have also been having some issues with the sight in my right eye as well as the hearing in my right ear and some cognitive issues such as some trouble finding words I want to say or just not remembering words at all. Both of my Oncologists agreed that a Brain MRI was the most logical next step with these particular ‘complaints’.

The results of the Brain MRI were a bit surprising. It showed that I have a small 6mm little brain baby in my frontal lobe. Not exactly what I wanted to hear. And here’s why. The good news is that this little guys is does not appear to be Metastatic in nature. My little guy is what’s called a meningioma tumor. Meningioma tumors are mostly benign and if they aren’t causing any issues they can stay put all comfy and cozy forever. In comparison to previous scans, it does appear that my little guy is growing and if he continues to grow, I will eventually need radiation to zap him back into submission.

OK, so there’s that. But it still doesn’t answer the question of why am I having increased migraines and the other issues. So, I was referred to a new Neurologist to see if she could get to the bottom of what was going on.

I spent 2 hours with my new Neurologist, Dr V. She was THROUGH. So much so she was asking my questions about my medical history so far back that I couldn’t remember! Things took an interesting turn when we got to the physical exam portion of the visit. (Relax, that’s not what I mean). Dr V did all the typical neuro tests – touch my finger to my nose, then to her finger. Follow her finger with just my eyes. You get the idea. Then she had my bend over a bit so she could examine my neck and press on various spots asking if this or that hurt. All was fine UNTIL she got to the right side of my neck and head and that’s when the mother off all pain kicked in and I was answering her with a loud YES, STOP! Dr. V seemed quite surprised to find the spots she was pressing on were painful to me and frankly, so was I considering that they didn’t hurt me 20 seconds before she started the whole pressing/poking process. She pressed up on my head as if following a path and each press hurt a little more than the last. EVEN MY HEAD!! What the hell was she doing?? I told her before she started this that I decided I liked her but now I was going to have to re-think my decision. She giggled at my statement, taking it as a joke but I was definitely NOT joking. This woman was hurting me and I wanted it to stop.

Finally, Dr. V told me I could sit back up. She told me she was pretty sure she figured out what was the cause of my complaints and probably the root cause of why I had been suffering from migraines for such a long time. Dr. V said I had something called: Occipital Neuralgia. Holy Hell. I have another damn medical condition??? So, Occipital Neuralgia is when the nerves that run from the top of the spinal cord up through the scalp, (those nerves are called the occipital nerves), are inflamed.

Dr. V tells me there is a procedure that can be done to ‘turn off’ that particular nerve and it will probably solve my issues and get rid of the pain I’ve been in. Um, OK, tell me more…. She tell’s me that the Neurosurgeon can do a procedure called a Nerve Block where he will inject pain medication into various spots along the nerve and in effect ‘block’ the nerve and kill it. Said in an easier way, it’s an epidural for my head but will last longer. I was all for it UNTIL she tells me WHERE the injections go. NEEDLES IN MY NECK AND MY HEAD. (There really needs to be a better way) Oh, yeah, and the best part, Dr. V tells me that yes indeed, there WILL be pain. LOTS OF PAIN. Oh goodie! Where do I sign up???

Regrettably, I am having an Occipital Neuralgia Nerve Block on Monday morning. I did tell Dr. V that I would be taking some Xanax prior to the procedure and she was agreeable. Which is kind of funny because she really didn’t have a vote in the matter. I am ONLY doing this because I am having 3-4 migraines a week, the vision in my right eye is not good and when my head hurts it’s almost impossible to see. When I don’t have a full blown migraine, the right side of my face feels heavy and the hearing in my right ear is strange, like there is water in my ear after I’ve been swimming.

This has all been going on for the last 4.5 months and has gotten progressively worse. It makes being on the computer or my phone very frustrating because I can’t see things very well. Even if I wear those magnifying reading glasses that are supposed to make things appear clearer, well, not so much for me.

So, if you happen to think about it, on Monday, please throw some good juju my way. That this procedure is really not going to be as horrific as I envision it to be and that it gives me some relief.